Any body have chronic lymphocytic leukemia out there?

Richsterr
Richsterr Member Posts: 34 Member
edited March 2014 in Leukemia #1
Hi
I am in remission and want to know how long can it last? On the average. What if it relapses, what are the treatments? MOre chemotherapy?

Thanks Richsterr

Comments

  • luv2cut1
    luv2cut1 Member Posts: 288
    #2
    My husband has CLL
    Hi,

    My husband has CLL. He was diagnosed in 2000. He has not had any treatment so far, but his next blood test is Tuesday. In 2008 he was diagnosed with throat cancer and in 2009 the throat cancer came back in the neck. He was treated successfully so far - his next scan is this week as well. The throat cancer treatment brought his blood counts down enough that he still did not need treatment for the CLL. Right now, they are hoping they can hold off CLL treatment for a while, as they feel that treating the CLL might increase his chance of recurrence of throat cancer. Overall, my husband has done very well through everything and we are very hopeful that with all of the research being done and the new treatments out there he can have a successful outcome.

    Congratulations on your remission and we hope it lasts a very long time.

    Myka
  • bvjernigan
    bvjernigan Member Posts: 1
    #3
    In remission for CLL
    Hi,

    I am 65 yr. old female and was diagnosed w/CLL 4 years ago, they "watched and waited" for over three years, and last
    Fall I started chemo, which ended in June 2010. I am now in remission (Dr. thinks 5 - 8 years-hope he's right!). I will be on treatment two more years w/Rituxin every other month, which they hope will prolong remission. I'm not sure they know this for fact, but it's possibly promising. I asked about what will happen when it comes back, and my Dr. said there is so much work being done in this field that what would be done now, isn't necessarily what will be done then. He told me he has one patient that he's been treating for over 20 years and is doing great. It's hard "waiting" for something you're told will come back. I think I have some depression, as normally I'm an extremely positive person. Am going to counseling because I want every single day I have to be joyful and want to get rid of this "sad" feeling ASAP!!! Anyone else feeling "numb" after chemo? Wonder if it could be chemical? Maybe affected seratonin levels? Would love to hear from anyone who's had this issue.
    Bobbi
  • msgenelle
    msgenelle Member Posts: 3
    #4
    bvjernigan said:

    In remission for CLL
    Hi,

    I am 65 yr. old female and was diagnosed w/CLL 4 years ago, they "watched and waited" for over three years, and last
    Fall I started chemo, which ended in June 2010. I am now in remission (Dr. thinks 5 - 8 years-hope he's right!). I will be on treatment two more years w/Rituxin every other month, which they hope will prolong remission. I'm not sure they know this for fact, but it's possibly promising. I asked about what will happen when it comes back, and my Dr. said there is so much work being done in this field that what would be done now, isn't necessarily what will be done then. He told me he has one patient that he's been treating for over 20 years and is doing great. It's hard "waiting" for something you're told will come back. I think I have some depression, as normally I'm an extremely positive person. Am going to counseling because I want every single day I have to be joyful and want to get rid of this "sad" feeling ASAP!!! Anyone else feeling "numb" after chemo? Wonder if it could be chemical? Maybe affected seratonin levels? Would love to hear from anyone who's had this issue.
    Bobbi

    CLL remission
    My husband was diagnosed with CLL in 1991 at age 61, he has had some treatment, the last was Rituxin with fluradabine about three years ago, he is now in remission after 20 years!!
  • tac1022
    tac1022 Member Posts: 1
    #5
    Throat Cancer/Cll
    Hi, I saw your post and wanted to ask a few questions.

    I have had CLL for about 6 years. I was treated, and it has been in remission since. Just recently, within the past couple of months, I have noticed that I have had a difficult time swallowing, and some light pain in my throat. Then over the past few weeks, I have had several swollen glands in my neck. I have an appointment next week for CT scans and to meet with the ONC, but I was just wondering if my CLL was returning or if I had developed a secondary cancer such as throat cancer. Which did your husband get first? CLL or Throat? and what were the symptoms from the throat cancer? Did the Dr's say if there was a connection between the two. Sorry to be bothersome with so many questions, just trying to figure out what's going on and thought you might be able to give some help. Thanks, Tommy
  • luv2cut1
    luv2cut1 Member Posts: 288
    #6
    tac1022 said:

    Throat Cancer/Cll
    Hi, I saw your post and wanted to ask a few questions.

    I have had CLL for about 6 years. I was treated, and it has been in remission since. Just recently, within the past couple of months, I have noticed that I have had a difficult time swallowing, and some light pain in my throat. Then over the past few weeks, I have had several swollen glands in my neck. I have an appointment next week for CT scans and to meet with the ONC, but I was just wondering if my CLL was returning or if I had developed a secondary cancer such as throat cancer. Which did your husband get first? CLL or Throat? and what were the symptoms from the throat cancer? Did the Dr's say if there was a connection between the two. Sorry to be bothersome with so many questions, just trying to figure out what's going on and thought you might be able to give some help. Thanks, Tommy

    Hi Tommy
    My husband had CLL first (diagnosed in 2000). He was still in W&W when he was diagnosed with throat cancer in 2008. His throat cancer symptoms began as an extreme sore throat and difficulty swallowing. He was clearing his throat constantly and then started having some blood in his phlegm. He always had some lymph node involvement from CLL in his neck, but one node got a lot bigger in a short amount of time. He went to his local doctor and got antibiotics, which did not help. Went to CLL onc who originally thought it was CLL related. Lucky for us, though, he referred us to ENT for a scope and biopsy just to be sure. That is when they found the throat cancer. They did a fine needle biopsy on the lymph node also, but only found CLL. They treated the throat cancer and one year later, it returned in the lymph node. Turns out they think the lymph node had it all along, but the FNA did not catch it because there were so many CLL cells. He was treated aggressively for throat cancer the second time in 2009 and so far, so good. He just started his first treatment for CLL last month (FCR) and I hope that does not cause a recurrence of throat cancer. The doctors say that it shouldn't, but again I am scared.
    What kind of treatment for CLL did you have? How long have you been in remission? First cycle of FCR went well for my husband, but we don't yet know if it is working.

    With respect to the throat cancer, I would definitely have it checked, and checked thoroughly, although most likely it is not throat cancer. The treatments for throat cancer have gotten better and if they catch it early, the chances for recovery are good. Please keep us posted as to what happens. I hope you are still in remission from CLL and your other symptoms are just a cold or other minor inconvenience. Thoughta and prayers are with you and please ask questions any time. This board is not super active for CLL, but I check it often. You can also PM me anytime.

    Good luck and have a great weekend.

    Myka

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